Feeling so down

Sorry in advance as this is just a major vent, I'm just feeling so down at the moment. I started with 25mg methotrexate, hydroxycholoroquine and folic acid in August but it was all making me feel really sick and with a one year old and a full time job I just couldn't take any more, so I stopped 3 weeks ago. I know it's stupid and I'm not helping myself but I'm so fed up of feeling sick, I have a massive needle phobia and I'm due to start the methotrexate injections next week and I just don't want to do it!! I was supposed to start them today but when I arrived to meet the rheumatology nurse at my local GPS, I was greeted by a care assistant as my nurse had to do the baby clinic instead. I had got myself psyched up for the possibility of needles and then felt so let down. And I told them that I have a really painful shoulder that naproxen isn't helping, and they have recommended to wear a sling all the time!! Not practical when I work full time, drive and have a baby.

I have just had enough and it's really getting me down 😩

9 Replies

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  • Darling after nearly 14yrs i still get frustrated with my disease. You sound like your newly diagnosed and it will take a while to get the drugs working in your system. Don't give up darling,ask them about having a pen to deliver you mtx as i believe it might be easier for you to deliver and i think you might not see the needle darling. Ask about a steroid injection into your shoulder darling as that should help you. Hugs from me.xxxxx

  • My heart does go out to you. I can only imagine how hard it is looking after a baby with this disease, so unfair.

    What job to you have and is your job aware of your illness? There are laws to protect and help you to continue to work with a disability.

    all the best to you and your bundle of joy :)

    Sue

  • Hi. As Sylvi said things do improve. I have had RA two years. I still remember the shock of the diagnosis. I was exhausted and in pain for months and very tearful and just had no idea why. I work in residential care and went off sick for 9 months. I went back to work slowly and now work p/t. Show family and friends RA information leaflets so they are more understanding and ask for help. Claim PIP. It does get better. Be patient. 😀 Xx

  • Hi- sorry to hear that you're feeling down. It would seem that you started on a high dose of mtx at the beginning of your journey; no wonder you felt so poorly! Do you take folic acid- if so how much and how often?

    I started on tablets and moved onto a metoject pen. I was very wary at first but I can't see the needle- or really feel it much. I read the advice on here about either not using the alcohol wipe if I'd just showered or if I do use it to wait a few minutes for it to dry on my skin to elevate any stinging afterwards - good advice ☺

    Please try the next step- they might reduce the mtx dose as more gets into your system this way.

    As for putting your arm in a sling? Surely, if you do that it will make it more stiff? I had a frozen shoulder at the beginning - it killed! Steroids did help but I had tablets as the intermuscular injections (given in your backside!) did nothing for me - but they work wonders for many. Do you have a hospital contact number to call for advice? I have a clinical nurse number for that. Or give one of the wonderful people at NRAS a call.

    Try and find some answers from someone professional- this thing doesn't go away- it just changes over time so you must stay focused - safe journey ☺

  • See if you can get hold of your rheumy nurse via their helpline (most hospitals have them although manning is very variable because of cuts) and explain your situation. Personally I don't think the sling idea is the right way to go. I have had a few injections directly into the shoulder which has helped. It is horrible but it can take time to find the right medication to help you and unfortunately they all take time to kick in but please discuss your fears with your rheumy nurse. Farm

  • Long before RA diagnosis, I had a 'frozen' right shoulder caused by over-reaching to clean an outside upper window surface from within house and was referred to physio. A prescribed careful 'pendulum' exercise performed with a can of baked beans swung gently from side to side and backwards and forwards whilst standing, leaning on a table with the opposite arm, solved that problem. When the left shoulder became similarly afflicted with no known cause, I underwent a programme of exercises with the physiotherapist and her trainee, to give the latter the experience of treating the condition and seeing it through to satisfactory resolution. Since those incidents both shoulder joints sound 'clunky' but only in the flare that resulted in RA diagnosis did I experience the painful discomfort once again of inability to raise my arms for showering, shampooing, dressing, etc.

    I still resort to those exercises periodically, as self-induced 'mechanical maintenance' to ensure retention of relatively smooth rotation and mobility. I can't understand why anyone in the medical profession would recommend immobilization in a sling for this condition.

  • That is so frustrating for you. To have a baby whilst having to deal with this disease must be so tough. My kids are a bit older now but even then it's been tough having to look after them and hide this illness from them. Fingers crossed you get some relief soon. x

  • Oh Amyfarqxo, I am so so sorry to know your situation. You need to get some helps from relatives or friends around you. It is okay to let people around know how much you suffer and you need help temporary. Where is the father? Get him to look after the baby while you are so sick at the moment.

    I remember those days at my peak of suffering, I could not even look after myself, it is so hard at your situation right now. Just open up yourself and do not be shy to ask for help at this very critical moment.

    It is certainly very strange to start mxt at the highest dose possible?? My rheumy told me that she could not give me too high a dose at the start but would gradually go up to stop the disease. She said my body needed time to adjust to mtx slowly. I started with 10 mg and slowly went up to 20 mg and now reduce to 12.5 mg slowly. I am in remission now after 1 1/2 years treatment. Check with your rheumy again on such a high dose to start with?? Can your body handle it??

    Do not just stop mtx until you check with your rheumy because you need mtx to fight the disease for you to avoid your joints being damaged. You need to give time to mtx to work on you, it will start to work on your body after about 12 to 16 weeks and it slowly put the disease at bay and the pain will reduce slowly. It all goes slowly, you need to hang on there to fight positively. Give yourself a year if not longer, that is provided you work closely with your rheumy and do your exercise regularly, you will be fine again.

    Do give up, you just need sometimes to fight the disease!

  • Hi Amyfar - Just a silly question, but have you tried KT tape for your shoulder? It is a kinesiology tape that works as you move that joint and it is wonderful. I use it on my knees, ankles, wrists, etc. as needed instead of gels or something. You can get it here in the states at most of the stores like Walmart, and on Amazon, but I'm not sure about the UK...

    I gave my friend some to try on her elbow which refused to heal or quit hurting. Her elbow was sore from the grandkids (she has six), and lifting them up and down, and had been that way for about 3 months. She said that the first day she tried it, there was a huge difference (support for the joint I would imagine) and within a couple of weeks she was pain free. Now she uses it when she overdoes the lifting and sometimes in advance..

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